Many parents of children with autism spectrum disorders (ASDs) report that behavior improves when their children eat a diet free of the proteins gluten and casein. Gluten is found primarily in wheat, barley and rye; casein, in dairy products. Last year, clinicians within Autism Speaks Autism Treatment Network (ATN) investigated the issue and found insufficient evidence of clear benefit. We called for clinical studies, and these studies are now underway.

While we’re awaiting the results, it’s reasonable to ask what harm could result from trying a casein-gluten-free diet. Certainly, dietary changes can be worth investigating and trying, and many parents report improvements in behavior. However, until more clinical studies are completed and more evidence of safety and benefit is available, parents who place their child on a casein-gluten-free diet need to take extra steps to ensure they do so in a safe and reliable manner.

First, when parents decide to try a casein-gluten-free diet for their child, I strongly urge them to consult with a dietary counselor such as a nutritionist or dietician. Although it’s easy to find casein-gluten-free dietary plans on the Internet, few parents—or physicians—have the experience and knowledge to determine whether a child’s diet is providing all the necessary requirements for normal growth and development. Keep in mind that foods containing gluten and casein are major sources of protein as well as essential vitamins and minerals such as vitamin D, calcium, and zinc.

I recommend that parents bring the nutritionist or dietician a 3- to 5-day dietary history for their child (writing down what was eaten and how much) and have this reviewed to determine whether there is a real risk for nutritional deficiency. The nutritionist or dietician can then work with the family to add foods or supplements that address potential gaps in nutrition.

After establishing a plan for a safe and complete diet, I encourage parents to set up a reliable way to measure their child’s response to the diet. This should start before the diet is begun, with a list of the specific behaviors that the family would like to see improve. Examples might include angry outbursts, inability to sit quietly during class, problems sleeping at night, or not speaking to others.

Next recruit teachers, therapists, babysitters, and others outside the family to help you objectively monitor these targeted behaviors and verify your perception of changes. If you reach a consensus that improvements are occurring, continuing the diet may be worth the cost and effort.

However, one should still question whether the improvements are due to the removal of all gluten and casein from the diet. The changes might be due to removal of just one of these proteins. For example, some parents report improvement with a casein-free diet, and others report improvements with gluten-free diets.

In fact, the behavioral changes may be due to dietary changes other than the removal of casein or gluten. For example, the improvement might be due to the fact that the new diet replaces processed foods high in sugar and fat with healthier foods such as whole grain rice, fruits, and vegetables.

These alternative explanations are important to consider because a strict casein-gluten free diet requires hard work and can be costly. For example, it may be difficult for your child to eat from the menus in a school cafeteria or restaurant. Birthday parties present another challenge. As a parent, you’ll likely be faced with the task of sending or bringing special meals and treats when your child eats away from home.

You do not have to give up pasta, only the brands that you currently buy. There are gluten- free pastas available at many major supermarkets and some specialty stores (DeBoles and Mrs. Leepers can be found in Walmart and other stores). You’ll have to look around in your area. There are several nutritious grains that you can use in place of barley for your squash dish. Quinoa is a good one and is VERY good for you and is a great source of protein.

Tinkyada Pasta Joy (rice based/corn free/GF) pasta is our favorite because it doesn’t disentegrate if you accidentally overcook it. It’s best to stick to GF pasta that is free of soy AND corn. (80+% of corn in the US is now genetically modified, causes massive inflammation , which our kids already suffer from, and causes organ damage to mammals in major studies). You can buy Tinkyada brand it in any decent health food store and many other grocery stores. Online grocers and Amazon have it. Awesome stuff.

BTW- GFCF is not just GFCF anymore- all the Gentically modified soy and corn wreaks havoc on our kids immune systems. Food dyes and nitritres/nitrates are poison.

We use more preservatives, additives, dyes, hormones, antibiotics, un-pronounceable ingredients and plain crap in our food than any other place I know. Friends from Europe, Australia, and Asia can’t beleive how much junk we put in our food and eat here.

My youngest son was diagnosed three years ago with Autism/ADHD and a friend introduced me to a natural product made primarily from milk.
I used this product and saw results in two months. Today my son shows no signs of Autism/Adhd, he is doing great in school and takes the initiative to do everything, truly a turnaround from the way he used to be. After the production of this milk it is the closest to mother’s milk and it is recognized by many Doctors today, if anyone is interested in finding out more about this, please email me at asha.persaud@gmail.com. Thank you

Thank you for this. I especially love the recommendations to use a nutritionist or dietician along with objective observers.

You left out one simple point, check for food allergies and intolerances. If a child has a history of reflux, constipation, or diarrhea (or any combination thereof), something else may be wrong including but not limited to food allergies/intolerances.

Thank u for discussing this issue Dr. Williams. It is very important to do many families
1) this information is dated. There is actually abundant evidence that GI kids benefit from dietary interventions. See ARI website and Generation rescue website. So much recent science.
2) ATN’s diet research is very poorly done
3) it isn’t just GFCF anymore! You must get all the processed garbage out of the diet. Also low oxcalate food must be used.
4) I have invited ATN leaders to biomedical conferences for 3 yrs. No one ever attends. This is where your consumers are and the best dietary intervention workshops.

I found your article to be very well balanced until I hit this paragraph: “These alternative explanations are important to consider because a strict casein-gluten free diet requires hard work and can be costly. For example, it may be difficult for your child to eat from the menus in a school cafeteria or restaurant.” Personally since forgoing gluten and processed carbs I actually eat less because my meals provide more satiety.

I will go out on a limb and say most of your audience here is not eating as well as they should be to begin with, why give them another excuse as to why their child shouldn’t eat healthier?

Thanks – our son has been on a GF/CF diet and probably the biggest improvement we saw was that he doesn’t throwup constantly or have loose stool. Affect on behavior is such a hard thing to determine with so many other environmental factors, but we tend to believe it is better. Very good advice on consulting a dietician – as with any diet.

My son was exclusively breastfed and was severely colic and suffered from extreme gas. I had to remove dairy from my own diet in order for him to breastfeed. At 6 months old I began introducing jarred baby foods and that’s when the throwing up started. I could never pinpoint which food caused it because it was inconsistent. Sometimes he threw up the pears and oats, and other times pear was fine, while most days he loved the spaghetti or chicken pasta but then sometimes he’d vomit. At one year old I started feeding him dairy because his pediatrician told me most kids outgrow a dairy sensitivity by six months. He refused to drink milk, which was a problem because he stopped nursing on his own at 11 months. So I really pushed the yogurts, cheeses, pediasure drinks, looking back, almost all of his diet was dairy and wheat (butter on toast, cereal, oatmeal, pancakes, waffles, sandwiches, mac n cheese, grilled cheese, pizza, ice cream, yogurt, crackers, pretzels, you know all the kid food. Fruits and vegetables made up a small portion of his diet, and i didn’t want him filling up on those low calorie foods when he was throwing up more and more, loosing weight, etc. I wanted him to eat the fatty cheeses on buttery bread. The doctors put him on reflux meds, had an inconclusive upper GI test, and eventually diagnosed his daily vomitting (even after drinking water sometimes he’d puke) to “easy gag reflex” and essentially blamed us, because as parents we must be giving him “attention” for him throwing up. At 2.5 years old what little speech he had was gone, his comprehension was regressing, and he was diagnosed with Autism by a leading neurologist at the Dan Marino children’s clinic without ANY diagnositc test performed. Against his advice and insistence that diet wouldn’t help, we removed gluten and dairy (we actually did this just prior to this appointment) and the last time our son threw up was the night before we put him on a GF/CF diet. That was 8 months ago now, and after a several other speech, langauge and development therapists performed a half a dozen tests, he is NOT on the spectrum. His speech is still severely delayed, but he’s talking again, and his comprehension improved from 67% to 98% since implementing the diet according to the actual placement tests provided through Early Steps that were offered before the diet (and before he started receiving speech therapy) and 6 months later. I am very scared of how many children are being diagnosed with Autism, and being told diet won’t help because it hasn’t been proven. WE HUMANS, NOT BABY COWS! We cannot thrive on cow breast milk and grazing on grass! We were designed to be hunters and gatherers, surviving on meats, vegetables, fruits, nuts and berries. The American diet is filled with processed, sugary, sodium rich, artifical flavors and colorings, hydrogenated oils, and far, far too much wheat and dairy. It’s time to become healthy, our kids are suffering for the poor diets we offer them :(

I am sorry that your son went through such a horrible time, and glad that you finally figured out the cause so that he could get healthy. However, the fact that your son has a sensitivity to certain foods doesn’t make them bad for everyone. I’m not referring to the processed/artificial/sugary crap (of course that’s all bad, all the time), but to the wheat and dairy. Wheat is not inherently bad, in moderation, for those who are not sensitive to it. And milk (in it’s organic form) is one of the healthiest foods on the planet. Please do not go around advising people that they should all exclude these foods from their diets simply because some people (relatively few) are sensitive to it.

We have a similar story, AMA we removed gluten and casein and the seizures, tantrums, sleep issues, vomiting and verbal issues resolved themselves. We have always eaten well – almost no fast food, soda, packaged food, but it was cheese and pasta that were making her sick. We supplement vitamins (and not those in the grocery store) and probiotics.

She’s 10 now (we started at 11 months) and developmentally she’s only 9 months behind, manages in a traditional classroom with an Ed Therapist twice a week, and shows very little of the autistic behaviors. HOWEVER, when she’s eaten something she knows she cannot tolerate, she loses her speech, ability to follow 2 step directions, any coping mechanisms (if we are rushed in the mornings there is a total meltdown), and a million other things. Everyone around her knows when she’s ‘wheated up’ because of the personality change. I don’t care what doctors say, I see it in my daily life. It’s extraordinary how different one person’s life can be with/without gluten and casein.

It’s interesting that when my two youngest children (15, 10) tell doctors, teachers, anyone that they don’t drink cow’s milk the first reaction is ‘what about your calcium?’ Both can answer that a better source is dark leafy greens which are a regular part of their diet. Hmm.

Dr. Williams, shouldn’t you check with the pediatrician if your child has constant GI issues to rule out infections, inflammation, allergies, sensitivities, or diseases such as celiac?
We found that probiotics were useful in balancing gut, especially after being prescribed strong antibiotics for infections.
We also found great help with enzymes that are able to break down the proteins in wheat and dairy. Enzymes are beneficial whether or not parents decide to use the GFCF to relieve the constant pain from GI issues and aid in digesting proteins.
I agree with Katie about synthetics in processed food. Artificial food is hard to digest.

I am glad there is more awareness of the pain children are enduring as they fight for relief from inflammation and infections. I hope pediatricians will become aware of bacterial, viral, and the many other issues that cause GI pain. Keep up the good work Dr. Williams.

I have tried the gfcf diet and the diet made my son feel even more seperate from his peers. The good did not out weigh the bad for US. Our family tried the diet for 3months. It added an extra $40-$60 to our groceries every 1.5 weeks.

Hi, I have found that this is not a big issue for HF kids. My son had no idea what a birthday party is! Feeling left out is the least of his problems. I am glad that your son is healthy and doesn’t need this intervention.

The vast majority of ASD families do not have a spare dollar for more doctors. ATN should NOT be referring out families for dietary intervention guidance. They should be educating themselves and providing this service to families. Also most dietitians are not autism GI knowledgeable. You might be wasting time and money. Do your own research first. NourishingHope , TACA, NAA are great websites.

Before my son was on a special diet, he only ate crap- chicken nuggets with MSG and 72 other un-pronounceable ingredients, yogurt full of preservatives and artificial flavorings, fast food fries with lots of corn syrup-laden ketchup, Mac & Chesse- which was made with GMO wheat pasta and powdered artificial cheese with food dye, and anything with sugar or fructose in it. He didn’t eat raw fruits or vegetables.

I was told to just “let him decide” what his body needs. Really? He decided his body needed goldfish crackers, Mac & cheese, chocolate milk and french fries 24/7.

Once I took this gluten and dairy away, he suffered some withdrawls, but then began eating healthy food, including fruits and vegetables and meats. He went from putting 2 words together, to speaking in full sentences in less than a month after removing gluten, dairy and soy. He also began using the toilet- after 3 years of failed potty training.

It’s just unbeleivable that after years of ATN “working on” some progress, (and I had high hopes and used to say good things about ATN! ) this is the best you can do? Where’s Richard? , is he still on the board?

Where is the choice for “Yes, and it changed our lives for the better!”? Before dx around 2 1/2, my daughter had no words, and very little verbal communication at all. It took 2 weeks to set up our in home therapies, by which time she was using 2 dozen words, apprpriately! Going to a nutritionist is, of course, good advice. However, I sincerely doubt a parent that was feeding their child a well-balanced diet before a gfcf diet is going to jump to all pre-packaged and processed foods, just as a parent not paying much attention to their child’s diet is, I would imagine, less likely to attempt the diet in the first place. I am very aware that the diet does not work universally; however, I am discouraged and disgusted that many parents are told by doctors that is doesn’t work, all the while offering them drug options.

My son is 14 and Aspergers. My daughter has asthma and when we learned of her casein allergy at the age of 1, we tested my son for it as well. When his test came up positive for a casein allergy, I cut it out of their diet and started with a probiotic to detox their systems of the yeast build up. I cant express enough the importance of a probiotic, among other supplements, which help in improving behaiors. These can all be regulated by any APRN or holistic doctor. Paired with a diet change, they can be life changing.

After initial hesitation we put our son Carlos on the GF/CF diet and it was night and day. A lot of the behavior we were working so hard to eliminate diminished or minimized, the problems he had with constipation, bloating, diarrhea went away. We also noticed him being less prone to respiratory tract infections. As a physcian and mother of a child with autism I believe you must try at least, especially when tests that are conducted on your child point out to a definite intolerance and or allergy to gluten and casein. Carlos was found to increased candida growth in his gut, although he never exhibited thrush or any other signs. After careful research and understanding the way Candida works in our body, this was the best choice for him. It’s important however, as the article mentions to visit a nutrionist who is willing and or familiar with this so that they can be on a balanced meal plan. Good luck to all and many blessings.

My daughter is high functioning and visually impaired. She is on a very strict NO gluten, casein, corn, soy, food dyes organic diet. When we put her on this diet her life and ours was totally life changing for the better. Before this diet she bounced off the walls and had severe behavioral issues. As soon as all of the above was out of her system she is a completely different child. She has complete self control and has no behavior problems any more. We can tell in less than an hour if she has consumed any of the foods by her behavior. She is 8 yrs old and has a great handle on her diet, what it does to her, not to eat foods that contain any of the above, and to ask what is in the food when something is offered to her. The diet is very expensive and costs more for her to eat in one year then it does for her father and I to eat regular food in one year. To our daughter and our family the benefits of the diet out way the cost of the diet. We are firm believers in the diet and encourage everyone to do the research and to holey commit to the diet. The GF/CF diet is life changing to the person with autism.

We started putting our 4 year old son on a gluten free casein free diet about 3 months ago and it has helped tremendously. He is less aggressive, eats better than he ever has and is less hyperactive. The catch is you have to follow it 100% to truly see the best results, which I’ve found very difficult to do, but I am trying very hard and hope to continue to see improvements. I would definitely recommend trying it. I would suggest getting his/her peptide levels checked first by doing a urine test. I wish I would’ve done this first, but had already started the diet when I found out about the test. For the test to have accurate results, the child needs to have the gluten and casein still in their system.
Good luck to whoever tries the diet! I’m so happy I did!

i have not tried this diet,but it sounds good. there is a lot of trial and error in childrens dthe dr, fiengold diet”iet ,especially in a child with autism or adhd. my son was born weeks premature and had vision and hearing problems and i ran across aworkshop material on dr. fiengold diet back in late seventies and just the basic because i didn’t have whole diet. i removed bha ,bht and artifical food coloring [ red and blue ] from his diet and gum which had preservatives in it. and a few years later we moved to missouri and found the whole diet was being used by some there. i started jack on it . it was time consuming to work it out, but well worth it as i found out the coloring in food, and corn syrup and several things and by the way colored toilet paper and soap can also make kids hyper . jack was diagnosed at kansas city childrens hospital in kansas city , missouri with legally blind and profoundly deaf and autism.at 5 years old in 1979. it has been a long road but diet changes helped jack tremendously . and i would think about thi and try it even know for jack. he is a wonderful young man now and deals withthings very well but he still does not talk but, as my mother used to say “he can tell you what he wants without saying a word. it took my husband myself and my daughter to get jack through a lot of thingsbut he and i lve by ourselves now and work pretty good together. i thank god for ” sondra and jack fisher

Our son is exclusively dairy/casein free. We tried the GFCF but had previously done the urine assay from the lab in the midwest that works with DAN and he only tested positive for the casein anyhow. We notice a huge difference in his behaviour and overall health. He gets a lacy red appearance to his skin, foul gas and belches and more bug bites than you can count when he has dairy. We can ALWAYS tell. Easy to do this one though and the alternative diet items are pretty tasty, the only hard one to find for a drink is the actual milk, either the taste or consistency is off for us. We would have stuck with it if we could have found local affordable alternates to gluten as well. I say it is worth a try, but it has to be a legitimate try before you rule it out. We also took out red dye and artificial sweeteners as these are thought to be neuro toxins or neuro excitors and use organic or natural foods as often as possible instead of processed. It really made us look at what we feed our kids in general as well as what we use to clean our house and bodies with. Good luck to all the families on the sprectrum, there is hope and healing, you just have to try it out and find the one that works for you and your child/family.

I am a junior working on my BCBA, I have a 6 year old son with infantile autism, I have seen with my own eyes the GFCF diet bring autistic children into our world and out of there internal prison. My son was tested and the doctor said he wasn’t intolerant to gluten but to try it any way. I can’t imagine what our lives would be like if we never tried it! You have to be 100% free for at least 6-9 months to see benefits. It is horrible difficult and expensive, but it will be worth it in the end. (I believe in it so much I am going to get my masters in nutrition when I am done with my BCBA!)

People should also be aware that soy substitutes (soy flour, soy milk, soy, etc.) can cause false negatives as to effectiveness of GFCF diets. For some, soy proteins act the same way in the body as gluten & casein & so soy probably should be avoided also.

Everyone, let’s use some logic and reasoning here. Start with what is known as anecdotal evidence (http://en.wikipedia.org/wiki/Anecdotal_evidence). Just because people report something does not make it fact. In fact, it doesn’t matter how many people report something as true. A whole lot of people will report that they were in fact visited by aliens. It does not make that true.

Hence “Many parents of children with autism spectrum disorders (ASDs) report that behavior improves when their children eat a diet free of the proteins gluten and casein” is of no evidentiary benefit. Courts and the police know that when 10 witnesses say they saw a man with a white shirt, they can ALL be wrong.

Humans are very bad at tracking things without measuring them. When I wear my lucky shirt, my team wins (except for the 10 times they didn’t and I did not notice). That’s known as confirmation bias (http://en.wikipedia.org/wiki/Confirmation_bias).

Also, what exactly does “behavior improve” mean? Does that not depend a ton on the persons reporting it? To one parent that might mean “she SEEMS to be crying less”. To another it might mean “He SEEMS to listen to me more”.

A benefit does not exist here unless there is a common and measurable agreement on “improved behavior”.

For example, there are probably half a dozen high quality psychological tests that have been independently validated as measuring “behavior”. Get a baseline. Run all those tests before the diet change. Then again after the diet change. And do this on a sample size of 1000. Control for age (um, kids change as they age – right?). Control for income. Control for other variables that might affect behavior such as school attendance, hours of sleep, nutrition levels, living arrangement stability. And THEN see what happens.

Oh and let’s control for just gluten. Just casien. Both, Neither. And placebo. And do double blind testing so neither the parents nor the children nor the third parties really know if or how much the diet has changed.

This is how real science works. This is how we land people on the moon. Not with casual observation and self reporting, but with real science.

I’m willing to put up $1000 of my own money right here right now. If the above can be repeated in 3 different countries and it shows a statistically significant difference between placebo and the other diet changes, you can take away my $1000 prize! Show me the studies, I’m sure there is someone out there that can show the evidence, so bring it please – your $1000 is waiting.

Until someone wins the $1000 prize, I highly recommend NOT changing diet. The article says “whats the harm [sic]”.. last time i checked it was both expensive and a real pain to avoid these protiens

Hi Bruce,
I support making a change in the diet for most of those on the spectrum as well as a form of prevention for many. The evidence that I consider valid is based upon the USDA Nutrient Database concerning the composition of the foods in the diet compared to the composition of the healthy brain. Typical for healthy brain tissue I suggest looking at NDB 13319 and compare this to NDB 1123, 1124, 1125 and then look at any of the other foods. Whole eggs or even egg yolks more nearly duplicate the composition of healthy brain tissue than any other food. I have had some great improvement in non-verbals when including 2 – 3 regular eggs every day. The improvement has taken two to four months in most cases.

Additional evidence is presented in the USDA Report on Choline. Regular eggs are the most natural food, gluten free, casein free, inexpensive and readily available in most countries. They include the choline, fatty acids, and cholesterol along with critical vitamins and minerals that have been found to be lacking in those with autism.

Prior to developing this portion of the evidence, more than a thousand responses confirmed on a circumstantial basis that the children were picky eaters and did not eat eggs, egg yolks, meats, etc. in sufficient quantities to provide adequately for the nutrients as identified in the USDA Data.

Most of my responses have come from the US, Italy, and the UK. and were from members of the “Autism Support Network.”

Bottom line, I recommend changing the diet if it fails to provide nutrients equivalent to two regular eggs daily. Most of the GF/CF diets promote products that are lacking many of the critical nutrients and I do not recommend them either.

I totally disagree with conducting a double/triple blind study with placebo on the basis that I would knowingly be causing a child to develop autism. I have not found any parents who were willing to be in such studies after reviewing my research with them.

This is a blog, Bruce; and last I checked, the purpose of a blog was for people to talk about experiences with different subjects. Your $1,000 “prize” is both ignorant and condescending, do you actually think the parents talking here don’t want research performed? No one is here to convince you of anything, and using Wikipedia for your references are irresponsible, at best, for any information. The diet can be, but does not have to be, more expensive; and “a real pain” is when your child is locked inside themselves with no apparent ability to communicate, even with those closest to them. Your post reeks of arrogance and ignorance.

Taddles

November 14, 2011 at 10:05 am

Actually, Bruce’s post is one of the few that isn’t simply reactionary or ignorant. It comes from a place of emotionless reason, which is where we need to start if we want to find actual, replicatable, meaningful solutions. Cheers to Bruce!

ska

November 20, 2011 at 11:42 am

I have a 3-yr old daughter with Autism. Bruce’s post above makes lot of sense. When parents of autistic kids are left with no answers and explanations, they tend to try unproven diets, therapies, etc. Then, they make themselves believe they are seeing improvements and doing something for their kids. I believe there is a big scam going on here where people and companies are making boat-loads of money by (falsely) promoting GFCF diets, enzymes, probiotics, vitamins, B12 shots, HBOT, etc. as alternative therapies for autistic kids. Please use common sense and better judgement when trying these things. Love your child and get them into early intensive behavioral therapy.

Every child is different my wife and I have experienced that our son does respond better to nitrate free / dye free foods. He has always had palate issues so his tolerance of most food is limited to cheese, bread, certain pasta and sauces, milk and fruit juices. He does not care for anything green and not many vegetables. His first two years of life he could and would eat just about anything until he was diagnosed with Autism and he started having palate issues now his diet is limited. Our son is almost 11yrs old his tolerance for most foods continue to be limited(creature of habit). We have found marked improvement with supplemental liquid DHA, Iron supplements, Vitamin D increasing his potential to grasp learning activities in reading,math and memory. We have observed other students whose parents provide only gluten/casein free foods to their childs diet with no apparent marked difference in their behavior, granted these children are not very verbal and their behaviors remain the same. We also believe that additional medications ie Abilify, Respridol. Clonodine, Prozac and Lamictal or others may be necessary to provide some children control with Hyperactivity and behavioral issues associated with Autism. We are still fighting a battle in that department but feel fortunate that our son is progressing rather than regressing when it comes to being able to focus on his academics.

My 10 yr old HF, Asp. son, soon to be 11, has displayed behavioral benefit when omitting wheat gluten and casein from his diet. Not surprisingly, his brother, mother and myself all abstain (as much as possible) from gluten and casein as well. Dr. Williams has truly piqued my interest with his article, regardless of the age of data derived from the various studies. While my son has enjoyed some benefit from skipping the stuff, he still suffers from the symptoms of his disorder. I believe it is possible that behavior changes with the whole family may be largely responsible for most of the improvement. In other words, Mom and Dad are more relaxed as a result of the diet change. As everyone knows, parent behavior is CRITICAL in eliciting positive progress in ASD children. Like it or not, we have to monitor our own behavior first when we deal with our children – non-neurotypical or otherwise.

While your article is thoughtful and understanding of many parents’ desire to “try something”, it seems less than completely responsible to encourage consult with a dietary counselor such as a “nutritionist” or “dietician” without explaining how to identify minimally appropriate education and credentials among such practitioners. Surely you’re aware that just about anybody can call themselves a “nutritionist” in the U.S.

Also, a little background of the whole opioid-like peptide hypothesis origin of this diet as an “autism treatment” is never inappropriate, although it raises questions about the utility/necessity of this line of research for many.

Dr. Williams I hope you are reading this feedback. Please catch up w your consumers and start serving our kids better. I detailed the problems w ATN’s dietary intervention research on ageofautism after trying and failing for 2 yrs to get ATN address research deficiencies. ATN has so much $! Let’s put those funds towards making our kids healthier. Don’t source this out, educate ATN doctors at the next ARI conference.

Hi, my name is Monika Bergman and I’m from Sweden. I have a beautiful son aged 12 with autism. We have removed all milkproteins several years ago because of all his stomachproblems. That helped him a lot and some of the “autistic behavior” (as some people call it) disappeared, probably because he suffered a lot of pain before that he didn’t know how to deal with. We are also considering whether we should try an casein- and glutenfree diet and my question is, after how long time can we excpect to eventually see some results in his behaviour or development? He does not speak, communicates just a little with PECS, sleeps with help by melatonin, but is a very happy little guy who connects a lot with his surrounding by lovely eye contact and body language.

Monika it is certainly worth a try. Go to nourishinghope.com and you will find some great information. No one needs gluten to live a healthy life. Chances are if removing casein helps, removing gluten will also be beneficial. You have to try the diet, strictly, for at least 3 months to know if it will help. Use nut flour, coconut is great, instead of wheat flour. Pecanbread.com has wonderful recipes.
The Specific Carbohydrate diet is also good. Elaine Gottschall and Judy Converse have written extremely helpful books on this subject. Check them out if you can.

I agree Katie,
I would like to add that if such training is done that it relate to the known deficiencies in these children and the subject matter should be evidence based—upon what the brain needs and the foods that can adequately provide the critical nutrients for proper development. If this education could be inclusive of those parents that have an autistic child and younger children not yet affected with autism, my research shows that prevention is very possible among the new siblings with inexpensive, safe, and proven simple dietary changes that include the foods derived from animal sources..

Agree Harold.
I have ben trying to get ATN to fund such dietary intervention research for 2 yrs- with no success. They stick to the same failed research designs and bad recipes year after year.No parent experts of kids like this are even involved in ATN dietary research any way.

Katie,
The real problem as I have found it is that they consider autism to be a medical problem.
This is not the case—autism causes medical problems. Medical solutions will never resolve the autism epidemic but an adequate diet will prevent and possibly cure these symptoms. Autism is largely (90+%), caused by malnutrition. No one has refuted this claim with data because to do so would be refuting the USDA SR 23 Nutrient database. In fact, the recent Food Guidelines from the USDA are themselves in conflict with the nutrient database. I consider the Guidelines to be flawed, not the database.

NO FURTHER EVIDENCE is required to validate that going from NOT being calculated about Food and Nutrition intake, TO being calculated, is worthwhile for every child with ASD.

In fact, it is scientifically impossible to dis-prove the validity of improved diet for ANYONE with compromised physiology – this is Hippocrates 101.

Given that HUNDREDS of scientific studies identify food-related symptoms and behaviors in children with ASDs, and that THOUSANDS of direct parent experiences (science!) from around the world indicate that making diet changes equate to measurable improvements in health, cognition, and behavior – one could argue that dietary intervention is THE most scientifically sound, proven, and safe approach.

Indeed there are permutations of dietary strategy: GFCFSF, SCD/GAPS, Body Ecology, Feingold, and others – and that every child’s needs and healing tactics may vary. However, ALL of these diets are strategies within the larger context of using Food and Nutrition in a calculated way to help the body heal (ease symptoms/engage potential). We call this “nourishing hope.”

If you’re doing something with diet, intending to aid health, engaging in strategic omissions and additions to food choices based on your learning and “front line” food related responses in your child – then you are nourishing hope.

In nearly 10 years being close to autism, ONE thing is clear – that when families embrace the concept and practice of nourishing hope – things improve. And, often for the entire family. When one behaves in alignment with what they believe, the likelihood of sustaining the behavior and seeing desired results GOES UP IMMEASURABLY. (that’s hard science).

I AM ENTHUSED that AS is finally acknowledging the role of food and nutrition – and encourage them to take it further and make it USEFUL for parents. 1) Provide best practice resources 2) encourage local support groups, 3) engage in effectiveness measurements to help encourage others 4) support education for parents and practitioners to LEARN best practices to help individuals identify the most effective dietary strategy for each individual and to address related matters (feeding issues, etc). 5) and more!

I.E. Help people DO something, and get “off the fence” about this. Indeed, there is deep science to support diet and nutrition intervention for autism – AND, it is common sense – ala Hippocrates.

The “work” needs to be in SUPPORTING families to be effective – given that most are already overwhelmed, don’t have adequate information or tools, believe that it’s not worth the cost or effort, have picky eaters, or have partners that refuse to believe it’s worth it. No matter what the perceived obstacles…Warrior Moms are making it happen around the world (TACA has a great article about GFCF on food stamps!). Don’t tell an autism mother that it doesn’t matter what they feed their child – they know better!

I wholeheartedly disagree with the sentiments of Mr. Bookman above. Too many people have been conditioned to believe “don’t get your hopes up,” and remain stuck in cerebral distance from what’s inherently human instinct. I don’t think he realizes the inferred insult to science and real moms by questioning anecdotal reports. He, and the bogus “news” headlines that purport that autism diets don’t help, are vehemently passionate about doing nothing – versus something. And why? Because it might be costly and challenging? (that’s also the stance of the Mayo Clinic…that it’s tough to do it, so why bother?).

How many autism moms report that their child eats a very restricted diet – mainly crackers, pasta, milk, bread, cheese….and also demonstrate things like diarrhea, bloating, infections, etc… ? And/Or are eating the Standard American Diet? And Mr. Bookman and others stuck in inhibiting mindset would argue they NOT care about what their child eats? Or that they wait for a double blind placebo controlled study that will help prove it’s worth it to try avoiding milk for a time? Really?

YES…there’s work to be done, more study to conduct, more science to investigate – indeed, but NO ONE need hesitate in learning BEST PRACTICES and the ease of beginning to improve diet and nutrition. There is plenty of support and guidance for families, no one should be inhibited to do something versus nothing – and, you needn’t have professional help to start. It’s not about getting it 100% right from the get go either…just like ANYTHING we do in life as we pursue a path of improvement…just getting ON the path, knowing WHY we’re doing it, and BELIEVING in ourselves about it, is most instrumental – begin, then evolve forward.

And finally… The Gluten-free and Casein-free diet is NOT “The Autism Diet.” As noted earlier, there are varied dietary strategies for ASD for varied individual circumstance and condition – each of course, should be underscored with core nutrition fundamentals. When we speak about diet and autism, we must speak about FOOD and NUTRITION for autism. And when you do that, you’ll quickly realize the unquestionable scientific and practical rationale for helping in this area.

And, the free Parent’s Guide at http://nourishinghope.com provides an overview for those learning what diet for autism is all about.

It’s time to get off the fence on this subject and focus on utilizing resources to HELP. As Autism Speaks embraces the fact that Food Matters for Autism, I am eager to collaborate with them to inform, educate, and empower parents and clinicians globally. We can affect great positive change in 2012 by working together and sharing leading edge science and practiced insight.

I remain committed to championing this message on behalf of parents and practitioners globally, and working alongside my wife, Julie Matthews, leading autism nutritionist and author of “Nourishing Hope for Autism.”

Martin,
I do make the argument that nutrition is the most important risk factor involved in the development of autism. If we want to make real progress toward eliminating this epidemic then my recommendation is to ensure that all children from about three months of age are in fact receiving a diet that will provide adequately for proper brain development. This I believe can best be accomplished by first understanding the basic balance of nutrients contained in healthy brain tissue and then provide foods that can adequately provide the needed nutrients that have been shown to be lacking in those with autism. This is something that can be accomplished safely and inexpensively. For the picky eaters the parents may have to get more creative to ensure the child will eat enough of the needed foods. I recommend a normal vitamin/mineral supplement daily along with the nutrition equivalent to that present in two regular eggs or egg yolks. I have found that anything less than that is very likely to result in the child developing autism or regressing as malnutrition develops.

This diet saved our life. Our son went from being moderately autistic and extremely defiant and hyperactive (running off, running around touching things, almost impossible to redirect or parent and violent) to being able to stay in inclusion all day with an aide, being able to have a conversation and make friends. He also had 5-6 other food allergies, and we found that out the following year, Epstein Barr virus, major environmental allergies, gut dysbiosis and PANDAS. Once we started addressing all these things,he got better fast and now his symptoms are really mild.
Parents need to make sure they supplement with vitamins/minerals that kids might miss out on by not eating casein/gluten, especially vitamin D and potassium, B vitamins, etc, calcium. Our son started getting really weak and sick till our allergist told us to supplement vitamin D, and then his repeat staph infections went away.
A good multivitamin and a trip to the nutritionist should be in order, and they need to look for other causes behind the autism. Doctors need to run more blood work, tests for viruses/bacterial infections/nutritional deficiencies, immune dysfunctions, etc.

I am the grandmother of an 11 yr old autistic girl. I saw my daughter go through hell with this gluten casien free diet. My granddaughter was about 5-6 yrs then. My daughter would spend literally hours over the stove baking and cooking for her. She did it for 3 yrs. She was living with me at the time, so I feel very confident in saying I saw NO, absolutely no difference.

Taddles :
Actually, Bruce’s post is one of the few that isn’t simply reactionary or ignorant. It comes from a place of emotionless reason, which is where we need to start if we want to find actual, replicatable, meaningful solutions. Cheers to Bruce!

My intuition tells me that “emotionless reason” can be dangerous.

In absence of consideration of the data provided us by our feelings (our senses!), we end up “just doing” what our perceived “experts” TELL us to do. I’ve personally met hundreds of parents (my peers) who deeply regret “just” trusting people and applying only “reasoning.”

We need to embrace the inherent connection of mind and body, not ignore our gut feelings.

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